Demographics
Details of data sources and gender of participants are shown in Table 1 and summarised in the Methods section. The table details the allocation status (intervention or control group in the trial) of participants in this qualitative study. A total of 16 individuals interviewed had been in the trial intervention group, while all 25 participants in the focus groups had been in the intervention group.
General experience of the brief text message intervention
Expectations, acceptability, and varying engagement with brief messages
At the start of the trial, participants appeared to have a clear understanding of and reasonable expectations regarding their participation in trial. They hoped to learn more about diabetes and welcomed the idea of receiving messages to support their adherence to diabetes treatment.
At the end of the trial, participants were positive about the intervention, finding it acceptable, and useful. Several reported an improvement in their health, in terms of lowered and stabilized blood sugar levels (from high levels they had reported at the start of the trial). However, participants’ level of engagement with the brief messages and their responses to the messages varied. Some reported that the messages helped with the improvement in their health and adherence behaviour, while others felt they had no real need for it (though it could benefit others). A participant recalled different messages he found useful:
“Yes, the ones they normally send you says: ‘Have you drunk your medication today?’, or ‘It’s close to your appointment’, ‘Remember to stay hydrated’, ‘Stay away from sugary foods.’” (Male, SA, FGD)
Those who reported an improvement in their health felt this was due mainly to their increased confidence in managing their disease, helped by a greater acceptance of the disease and by family support. For some, it was the reminder messages that helped them to refill and take their medications more regularly. Healthy lifestyle messages were valued as reminders of the importance of diet, exercise, and stress management, and for its practical advice. More generally, the messages provided increased confidence and self-responsibility for taking their medications. A few participants expressed disappointment that the messages merely reinforced what they knew already, and a few would have preferred two-way communication that allowed for direct consultation with health staff.
Relational elements of the brief text messaging intervention
Participants identified messages and how this influenced their adherence behaviour, but they also identified more subtle relational effects that related to their participation in the trial. There are two elements to the relational effect. The first is that participants had appreciation for the content of the messages, as well as for the experience of receiving the brief messages. Messages generated a sense of encouragement and support, and it felt as if they had a supportive relationship with the sender of the messages. Message content was useful, but receiving a message also felt like an act of caring. One participant described it this way:
“I feel like there is someone out there who cares about me, who thinks about me. He sends me a message to tell me to take my medication. It's nice to have someone who sends messages.” (Male, SA, FGD)
A participant, who had been living with diabetes for 4 years, expressed a similar sentiment about feeling cared for, as if someone sent her a prayer:
“You know, it not about the message. You send a message to my phone; I take it as a prayer … knowing there is somebody that cares.” (Female, SA, IDI)
A second element is that some participants, in both the intervention and control groups, felt encouraged and supported by merely participating in the trial study, irrespective of receiving regular messages. Participants showed appreciation for the positive interactions they had had with research staff during the study enrollment and exit procedures. They recalled feeling respected and listened to, could ask questions, and learn more about their condition, without feeling judged. One participant said she had a similar feeling of being listened to when she saw a psychiatrist for anxiety, while another felt she had a companion, whom she could “talk to in my head”. Some in the control group had similar feelings of being cared for, especially when receiving a ‘Happy Birthday’ message.
Experience and responses to brief text messages in relation to health
Reminder messages as prompts for refilling medicine
Participants in both sites knew the importance of refilling their medication and reported that most of the time, they remembered their appointment dates, and could collect their medicines on schedule. Participants continued using the same reminder strategies they reported at the start of study, such as checking their appointment dates intermittently, and relying on family to remind them. The reminder messages helped some participants play a more active role in developing strategies to remember, and to be less reliant on family. For instance, checking their due date in their patient-held record (called Health passport in Malawi) or their clinic appointment card (South Africa). Several participants acknowledged that they sometimes struggled to remember their medicine pick-up date (due to being forgetful, or a busy lifestyle), and some found the reminder messages particularly helpful.
“I told you that I easily forget things, but the messages were reminding me, especially the clinic day, I tend to forget it, but the messages were reminding me.” (Female, MLW, FGD)
The reminders were useful for the extra prompt it provided, even for those who considered themselves to be strict about their adherence, as expressed by one participant:
“The SMS you guys sent us is very great. It helps because it encourages you to stay on this programme, and without this programme, you know, we are human, you will find ways of dodging the issue, preventing yourself from going to the doctor.” (Male, SA, FGD)
Participants also spoke of a range of obstacles that sometimes prevented them from refilling their medication. In Malawi, these included economic factors, such as having no money for transport for their 3-monthly visits (some travelled for a 2-h journey by public transport) and having no money to purchase their medication privately when the clinic was out of stock. In South Africa, refilling required more frequent visits (monthly or 2 monthly). Due to clinic constraints, this usually required getting in line in the early morning hours before the clinic door opened, followed by long waiting times inside the clinic, clinic congestion and poor interactions with staff, experiences which made them reluctant to visit the clinic on their appointed dates.
Reminders to prompt and motivate taking medicine as prescribed
Participants indicated that for the most part, they take their medicine as prescribed, though several acknowledged it was an ongoing struggle. They continued to use the same reminder strategies as before the study, such as visual cues and daily routine, placing the medication on the bedside or kitchen table so its visible in morning, evening, and mealtimes. They also depended on family to remind them.
A few reported being strict about sticking to their medicine regimen (especially if also taking insulin) and having a sense of pride about being adherent to treatment. Some acknowledged not always taking their medication as prescribed, due to forgetfulness, or being too busy or tired. For them, reminder messages acted as a prompt to take their medications and reinforced the importance of taking medications regularly. A female participant who had been living with diabetes for 5 years (oral medication and insulin), said the messages helped her to become more self-reliant:
“I no longer have this thing where you will find my sugar high. It’s all thanks to the SMSes, they help me. ‘Don’t forget your time’, … ‘Don’t forget your injection time’, ‘Don’t forget time to take pills.’” (Female, SA, IDI)
Similarly, a female participant from Malawi, living with diabetes for 5 years, explained that the messages helped her to keep going with taking her medications despite the side-effects, whereas before she would miss dosages when she felt nauseas.
Even those with good adherence described having the occasional slip-up. A participant described how a perfectly timed reminder message once prevented her skipping her night-time dose:
“I see they encourage us a lot, like this other day I was coming from my business, and I was very tired, and I was just dreaming of getting home, taking a bath and sleep. But before I slept, I just received the text asking me if I have taken my medications. That day I completely forgot; thanks to the message it reminded me, otherwise I could have slept without taking the medications.” (Female, MLW, FGD).
A few participants also appreciated the messages about managing one’s medication in risky situations, such as social gatherings and travelling. They made sure to always keep a spare dose of medicine when travelling or attending social events.
Participants appreciated the importance of taking medicines regularly and long-term, but in many cases, despite their best efforts, their adherence behaviour fell short. They described a range of partial adherence beliefs and practice that had become part of their normal routine. The brief messaging did not seem to shift these beliefs and practices. Such behaviours included, for example, skipping one or more of their dosages on a regular basis, dropping one of their prescribed diabetes medications, taking a break from taking their medicine for a couple of days or even months, or substituting with alternative remedies. The partial adherence behaviours was reportedly in response to difficult and distressing side effects of diabetes medicine that are ignored by clinicians, and insufficient knowledge and counselling to understand why changes are made to their treatment. Other reasons include pill fatigue, beliefs about giving the body “a break” or “cleaning” the body from time to time, valuing alternative herbal remedies, concerns about different chronic medications “clashing” with each other, and suspicion of prescribed medicine with a different appearance. These beliefs and practices seem to be fairly entrenched for some, and often operated in parallel (even in contradiction) to their beliefs in the importance of following doctor’s orders.
Healthy lifestyle messages provide knowledge and motivation for healthy behaviour
Healthy eating
Participants were generally aware of the need to have a healthy diet, but reported a lack of adequate, useful, and timely information to guide them. They had concerns about what constitutes a healthy diet, and what local foods were available and affordable for people with diabetes. In addition to this knowledge deficit, participants had different levels of belief in the value of health eating, alongside medication. Some participants became more convinced over the years, while others became less convinced about the importance of health eating. A woman with substantial weight loss due to healthier eating (she dropped 3 dress sizes) became disillusioned about healthy eating when her blood sugar level did not stabilize. By contrast, a male participant who had a dramatic improvement in his health became convinced it was due to his running and weight loss. Malawian participants who did home-farming felt it kept them physically active and provided healthy produce for their families.
Participants noted that messages about healthy eating increased their awareness, made them conscious of what they are eating, reinforced their own ongoing efforts, and provided them encouragement and practical advice on what foods to eat and to avoid. They recalled messages on limiting fat, oily and sugary foods, and about using healthier food substitutes. A participant explained how these messages helped her manage her diet:
“I remember that it is important to reduce fats and reduce sugar. If for example, I crave red meat, I need to ensure that I remove the fats, and to boil it instead of frying, so to assist the medication I take. It will be pointless for me to take pills and eat unhealthy because it might look like the medication does not work.” (Female, SA, IDI)
A male participant who was diagnosed with diabetes the year prior to enrolling in the trial, said he was well-informed about what foods to eat and to avoid, but that the messages were useful as it helped him to better manage his cravings for the wrong foods. The messages also helped with managing household challenges of cooking and eating, such as getting family support for changing to healthier food options. A woman living with diabetes for 6 years, described how the messages helped to persuade her family to use healthier food preparation:
“I was telling me children, please just boil my food, they refuse. They say I am just being stubborn. So, when I received a message from StAR2D talking about fried foods, I showed them and now they are still applying this knowledge whenever they are cooking, and they cook without adding oil”. (Female, MLW, FGD)
Adhering to healthy eating at social events can be challenging and for a couple of participants, the messages helped to remind them to eat in moderation at social events.
Physical activity
Participants noted that although they were aware of the importance of regular exercise, they felt exercise was hard to achieve. They appreciated the messages for suggesting more feasible ways of keeping physical active. The exercise related messages motivated a few participants to increase their physical activity by walking more, doing more housework and gardening, and even considering dancing for exercise:
“Yes, I started doing exercises instead of just staying [inactive]. And they even told us if you cannot manage to do exercises, you can put music on your phone or switch on the radio and start dancing.” (Female, MLW, IDI)
Stress management
Some participants were convinced that stress was the reason for their high and fluctuating blood sugar levels, and some found the stress management messages particularly helpful. They felt stressed when their efforts to be adherent to treatment (taking medicine and healthy eating), did not lead to improvement in their blood sugar levels. Other stressors included loss of a spouse or other family members, and chronic worries about a range of issues (for example, ongoing ill health, one’s diet, substance abuse in the family, financial insecurity, visiting an overcrowded clinic and being scolded by clinic staff). The messages reminded and prompted them to make a conscious effort to better manage their stress. For example, avoiding getting stressed by other people’s problems, keeping busy as way of managing stress (one women helped in the family home shop), and reminding themselves to relax when their sugar level was high.
Complex factors influencing diabetes adherence and engagement with the intervention
As mentioned earlier, participants reported a range of partial adherence behaviours that seem to be routine and influenced by individual beliefs as well as social factors and health service challenges. Partial adherence behaviour included reducing and skipping medication, taking alternative medicine, and struggles with eating a healthy diet, exercising, and managing their stress. Below we detail some of the underlying reasons.
Diabetes distress
The overall impression, from some participants, was that living with diabetes was difficult and distressing, more so than the other chronic diseases they suffered from (like hypertension, high cholesterol). The main reasons for the distress relate to the seriousness and discomfort of the symptoms, the fluctuations in blood sugar levels, unpredictability of health changes, and a chronic sense of not being able to control the disease, no matter their efforts. Living with co-morbid diseases further complicated the experience. Dealing with fluctuations of symptoms from multiple diseases was frustrating, as was the different intervals required for taking diabetes medication (compared to medicine intervals for their other chronic diseases).
Navigating complex and contested interactions with health services
Participants had an appreciation for efforts by the health services but found patient-provider relationships to need improvement. They felt their views were not sufficiently considered, that complaints of side effect were ignored, there was insufficient clinical communication about treatment, lack of affirmation of patient efforts, and in places, poor organisation of patient care and limited access to medicines – factors that contributed to stress and demotivation with managing their diabetes treatment.
What helps to manage diabetes?
Accepting one’s diagnosis and coming to terms with the need for lifelong medicine was a key factor in improving managing of diabetes. Acceptance meant worrying less about the underlying reasons for one’s condition, feeling empowered to take more self-responsibility for one’s treatment and health, and finding it easier to follow medical advice about adherence. A female participant living with diabetes for over a decade learnt from a ‘role-model’ diabetes patient in the community, who helped her to be more accepting of the illness, and to “… just abide what we are told at the hospital” (Female, MLW, IDI). Other sources of support came from family, friends, religious faith, ‘good diabetes’ patient role models, regular health awareness talks (mainly in Malawi), and counselling and affirmation from health care staff.
